living well with hereditary pancreatitis, type 1 diabetes, and pancreatic cancer​

In the three-ish weeks between my cancer diagnosis and the start of my chemotherapy, one of my sudden preoccupations was hair. Maybe not so sudden, since for years I’ve enjoyed trying different hairstyles and products, searching for inspiration on Pinterest and reading articles on the Curly Girl Method and microfiber towels. But now I was obsessed with finding new ideas for short hairstyles, head wraps, and chemo scalp care. Nothing about my hair was changing yet, but I decided I needed to change it. I knew it would be falling out soon, at least somewhat, and I couldn’t stomach the thought of my thick shoulder-length falling out in clumps. I’m sure I also wanted to mark the change in my sickness and take control of some part of my body. So I went to a salon in Roland Park and got my hair chopped off into a pixie cut.

I had never before felt confident enough in my face to go for such short hair. When I was overweight before, I tried to grow my hair longer or style it fuller, to cover some of the chub in my cheeks and chin. But cancer sucked all that chub away and I found, almost overnight, a much thinner face in the mirror. In fact, in those early weeks when I was getting my port, preparing for chemo, and still dealing with a lot of pain and nausea, I was so dehydrated much of the time that my skin stretched dryly over my jaw, parched and sunken. I knew I looked unhealthy, but I still felt newly beautiful. Thank you, society.

I was pleasantly surprised to find that I loved having short hair. It was so much easier to clean and style, and everything about it just felt effortless and cute. I got used to it pretty quickly, even though I’d always had a habit of twirling bits of my hair around my fingers when I was bored or deep in thought. Short hair was easy, it was comfortable, and it helped me fear my inevitable hair loss less. It worked for me, and it worked really well.

Until it didn’t. Probably four weeks into my chemo, my hair started to change. My scalp got tingly and sensitive, always feeling like I was pressing a cowlick the wrong way, or like I had raging hat hair. A new forest of flyaway hairs sprouted all over my head, like Seussian fluff waving in the breeze. Combing my hair was dangerous, and showers became agonizing. No matter how careful I tried to be washing my hair in the shower, I started losing multiple fistfuls of hair every time. My growing collections of fallen hair on the bathtub rim, and the thick coating all over my palms every time I ran my hands over my head, sickened me. I wasted water just standing in the shower, trying to clean up this tremendous loss. When my hair was dry, it shed constantly, and I had to grab handfuls of flyaway hairs off the sides of my head, to avoid looking like a demented clown. The volume of loss was startling. It was all too visceral.

One day, after another soul crushing shower, I spontaneously buzzed my hair all the way down. I had stepped out of the shower and tried to comb what was left on the crown of my head into some respectable comb over, and got so incredibly sick of it. I pulled out my husband’s Wahl trimmer and the number four attachment, and stared hard into the mirror. Suddenly nervous, I pulled up the YouTube app on my phone and searched for helpful videos. There are actually a huge number of YouTube videos of women buzz cutting their hair, as tutorials or triumphant celebration videos. I watched parts of a few to get the general idea of the best technique (try to do it evenly, in sections, but you can always go back and clean it up), and to get pumped up for my own impending triumph. My heart racing and my hands slightly shaky (although they almost always are, because of my diabetes), I looked myself straight in the eye and buzzed down the center of my head. That first pass was exhilarating, maybe even a revelation. It taught me that I can do something brash and reckless, and that I don’t have to let my illness just make me sad. It also taught me that lady buzz cuts are kind of sexy.

I trimmed and trimmed my hair, shaving off the clumpy mess and carving a patchy field of sparse red tufts. I worked until I was almost late for my acupuncture appointment, then threw on one of the polyester turbans I had just ordered from Amazon and ran out the door. Arriving a bit out-of-breath and frenzied, I told my acupuncturist what I had just done, and pulled the cap off to show her. She complimented the new cut, but I think even if she hadn’t, I would still have felt beautiful and powerful, and least for that triumphant day.

This morning I woke up with a narcotics hangover: migraine, nausea, and the roaring return of the same exact pain. Maybe I shouldn't have done the celiac plexus block last Thursday, because that was supposed to reduce or eliminate my pain, but I've had continuous pain since immediately after the procedure. Maybe this pain now, my usual dull ache pancreas pain accompanied by sharp pains down the left side of my abdomen, is all from my enlarged spleen. My spleen: holding onto platelets and making me ache, the little sneak. Maybe it's all brought on my stress, and that's all my fault right now. Maybe if I meditated more or stopped freaking out about the future so much, pain wouldn't rear its ugly head so much.

Well, the truth is that today, I have no idea what I'm doing with my life (or what's left of it). I found out yesterday that I didn't get a new job I thought I deserved, but that I might have a very good chance at the next opportunity (for a lateral move with full-time hours, not a promotion or any position that actually uses my master's degree). Then I wonder, from in the middle of all this recent pain, whether I can really do full-time work while I'm still actively in treatment. Chemo takes a lot of time. For me, it's at least 5 hours every Monday afternoon for 2 weeks on, 1 week off. Then it's the infusion recovery, when I feel like shit and can't focus on much (so often don't make it to work), for at least a full day after infusion. Then, of course, I still have to take my chemo pills, morning and evening, every day for those 2 weeks on. Those aren't so awful, but they still drag me down.

And now if I need some kind of interventional radiology procedure (to "shunt" part of my enlarged spleen so it will release more platelets and boost my natural platelet count, or something like that), that will take at least a day, plus possibly another day for recovery, if it's as painful and traumatizing as my liver biopsy was (also done by interventional radiology). Seriously, their jobs must be the worst, because they basically stab sick people who are still awake. All you get is local anesthesia, then they come at you with an ultrasound wand and vicious needles. Only after doing this procedure and testing my blood counts again to be sure it worked, can I go back to chemo to continue my treatment. In the meantime, who knows how much pain I'll have to live with?

So should I even be trying to get a new job in the first place? Should I just sit tight where I am, focus on doing that job well, and leave myself plenty of time for self-care and treatment appointments and recovery time? It's true, cancer is a full-time job. Or at least a part-time one I'm trying to work in around my real part-time job. And all of this is so exhausting and demoralizing that after a while I just want to curl up in a ball and make somebody A) Take my cancer away and B) Make decisions about my life for me. And even after that, I'd probably still wonder whether anytime I'm spending time on (work, household misc., etc.) actually means anything valuable at all when I have a possibly terminal disease, on top of two other chronic illnesses.

This time, instead of curling into said ball, I decided to take a little drive to my favorite part of Baltimore, Hampden. I went to the shop my husband and I always walk through, more for old times' sake than for actual shopping. (This time, though, I did need a nice birthday card for him.) And I happened upon some silly little tchotchkes for sick people (in the get-well-soon greeting card and gift section of the store):

I ended up not buying any of these delightful little things, but now that I'm home and I've looked up their websites, I definitely respect what they do. Maybe I'll go back and get these, despite my initial misgivings. The little crossed fingers pin really hit me at the right moment. I was feeling so down and lost, so unsure of what I'm even doing with my life. At those times, it's helpful to see a reminder of that age-old convention: "things will work out fine." Then I thought to myself, ever practical, where will I even pin this? Will I ever wear it? (For $11?) Then my darker side kicked in and I wondered, do they really, the things? Will things really work out? Honestly, I don't know, and no one does. That's part of life as we know it. But maybe I don't need a constant reminder that I have zero control over my own future, and that blind faith in my idealistic dreams is exactly that: blind faith.

I was definitely happy to see any representation of a pancreas anywhere, but this keychain one is maybe a little too doofy and spiky at the same time. The liver pin is pretty great, though. If I worked in health care, I'd definitely wear these. I might wear them to PANCAN events. I don't think I'd wear them at work, next to my name badge. But that just might be because I'm not ready to invite conversation about my cancer with coworkers or members of the general public (I work in a public library). And I like the chemo IV bag decals, and really appreciate the story behind them, but I'm not sure that the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins would allow me to put stickers on my IV bags during chemo infusion. But, something like this sweet little felt brooch from yourorgangrinder on Etsy, yes, this I could get behind: